Keeping Healthy

What is caregiver stress and burnout?

Taking care of another person can be stressful. Everyone has some stress, but too much can harm your health, relationships, and enjoyment of life. Caregiver stress happens when you don’t have time to do all that’s asked or expected of you. You may feel like no matter what you do it’s not enough, or like everything is on your shoulders. Caregiver burnout happens when you are in a state of stress or distress for a prolonged period of time. Caregiver stress and burnout can affect your mood, and make you feel tense, angry, anxious, depressed, irritable, frustrated, or fearful. It can make you feel out of control, unable to focus, unsatisfied with work, or lonely. Caregiver stress and burnout can also cause physical symptoms like sleep problems, muscle tension (back, shoulder, or neck pain), headaches, stomach problems, weight gain or loss, fatigue, chest pain, heart problems, hair loss, skin problems, or a colds and infections. It can lead you to abuse alcohol or other substances.

What causes caregiver stress and burnout?

These things can lead to caregiver stress or make it worse:

Fear & uncertainty: Cancer treatment isn’t certain. It’s hard not to worry about the person with cancer, and the future.

Shifting roles: Caregiving can change relationships. This isn’t bad. But, it can be upsetting when someone who has been a source of strength is suddenly vulnerable, or when you find yourself making decisions somebody else used to make.

Too much to do: As a caregiver, you may feel overwhelmed by all you have to do, and as though everything is falling on your shoulders.

Financial pressure: The costs of cancer care can be a source of stress. Also, you and the patient may be unable to work full-time—or at all.

Loneliness & isolation: Caregiving takes time. You may find you don’t have time to spend with friends, take part in outside activities, or pursue hobbies.

Little time alone: Everyone needs time for themselves. This can be difficult to get when you are caring for someone with cancer.

Constant demands: Being on call around-the-clock can be especially hard.

Guilt: You may feel bad that you can’t give more, or you may feel that you are short-changing other family members and friends.

While all these things are common among caregivers, there are things your can do to lessen your stress.

How can I deal with my stress and burnout?

Ask for help with caregiving and accept it! Make a list of everyone who may be able to help you out. Make a list of the things that can be done by other people like running errands. Then, ask others to do things for you.

Talk to someone—a friend, counselor, family member, or clergy member.

Talk to a professional if your stress is becoming a problem.

Take care of yourself. Eat well, drink enough water and other fluids, and try to get some exercise every day, even if it’s just a walk around the neighborhood. Get regular medical and dental checkup.

Identify sources of stress, and write them down. Think about the things you can improve. Try prayer and/or meditation to accept the things you can’t change.

Give yourself permission to grieve, cry and express your feelings.

Try meditation, yoga, music, or deep breathing to relax.

Join a support group like My Cancer Circle, which is especially for caregivers of people with cancer.

Focus on the positive. At the end of the day, make a list of the good things that have happened. Give yourself credit for what you’re doing. Forgive yourself when you don’t do things as well as you want. Remember that you are doing the best that you can.

Take time for yourself. Ask a friend or family member to stay with the patient or hire someone to give you time off to shop, go to a movie, or visit a friend.

Learn to say "no" when someone asks you to do something that you don’t want to do, and/or that may be draining (like hosting a holiday meal).

Educate yourself. Get information from your doctor, the Internet, local library, book stores, or local support groups. This may help with feelings of uncertainty. You’ll find a list of valuable resources here.

Why is it important to ask for and accept caregiver help?

Caring for someone with cancer can be hard. As a caregiver, you are at increased risk of emotional, mental, and physical problems. You may feel stress, anger, anxiety, depression, fatigue, loneliness, and uncertainty. Some caregivers find it difficult to ask for help. You may feel embarrassed or like you’re imposing on others. But getting caregiver help is important—for both for you and the person you are caring for.

Other

When and how do I ask for caregiver help?

It is never too early to ask for help. If you can, ask before you need it. This has the added benefit of giving others time to plan.

Start by asking the person you’re taking care of to help you make a list of friends, family and anyone else who might lend a hand. Don’t overlook people you may not know well. People at your church, school or work may want to help. Next, call the people on your list, and ask if they are willing to pitch in. Even if you don’t end up needing their help, it will be good to know it’s there just in case.

Remember that many people do want to help, but don’t know what they can do. Tell them exactly what you’d like. For example, “Can you take Joe for a lab draw on Monday morning before 9am?”

What is a Caregiving Plan?

A Caregiving Plan lays out what needs to be done to manage the health and well-being of the patient. Unlike the doctor’s “plan of care,” the Caregiving Plan addresses mostly non-medical issues. A Caregiving Plan can help you line up outside help ahead of time, avoid schedule conflicts, improve communication, and reduce caregiver stress and overload.

How do we make a Caregiving Plan?

Prepare
Talk to the patient about the level of care he or she thinks will be needed. The person receiving care should have the biggest voice unless he or she is mentally or physically unable.

Pull your team together
Make a list of everyone who wants to help, including family members, close friends, health professionals, home care workers and others in the community.

Take stock of the situation
See the section below on areas you need to think about. Remember that the level of care needed can change. The person with cancer may only need help for brief periods of time like after surgery or chemotherapy. Or, he or she may need constant or almost-constant care. People who are not able to recover will likely need more help as time passes.

Make the Plan
Once you have put together your team, and considered the patient’s needs, it is time to sit down with all the players and put your Caregiving Plan together. The written Plan should include:

Take action
Make sure everyone has a copy of the Plan. Then check-in with each other regularly to make sure things are getting done. The care team should assign a point person for each area of care. This doesn’t mean that person has to do everything in that area—just that he or she is responsible for seeing to it that those tasks are done. As things change, be sure to update the Plan.

What do we need to think about when making a Caregiving Plan?

Physical health & medication

Is the patient able to see and hear well? Does the person need professional nursing care to manage wounds, drains, catheters or other medical equipment? Does he or she have other diseases that need to be managed like diabetes, high blood pressure, arthritis or emphysema? What medication is the patient taking? Does the patient need assistance taking medication or remembering to take medication?

Mental health

Does the patient have any mental health issues like depression, anxiety or psychosis? Should he or she be seen by a mental healthcare professional?

Everyday activities

Does the patient have problems with incontinence (inability to control urine or bowel movements)? Can he or she move around safely and comfortable? Can he or she dress, bathe, shave, brush teeth, wash hair, use a toilet, and use the phone without assistance? Can the person get help in an emergency, shop, prepare meals, do housework, yard work, and/or drive safely? Does the patient have any eating issues?

Home safety

Are there any hazards in the home? What type of yard and house maintenance is needed? Are there stairs? Can the patient manage these? Are there grab bars in the bathroom? Are these needed? If the person with cancer lives alone, is there an emergency call system in place? (Learn more about home safety.)

Finances

Can the patient manage his or her affairs, including paying bills? What is the patient earning and spending? What are his or her income sources (e.g. Social Security, pensions, salary, investments, etc.)? How long will his or her savings last? Are there any other sources of financial assistance? Where are important financial documents—like the car and home title and insurance policies—stored?

Insurance

What insurance coverage does the patient have? Medicare? Medicaid? Private insurance? Does the patient have long-term care insurance, supplementary insurance or life insurance? Does insurance cover "non-medical" personal care? Has the patient been told that insurance won't cover medical tests or procedures that the doctor has ordered?

Legal

Does the patient have a will, trust, advance directive, or living will? Have they signed a healthcare proxy or power of attorney? Do the primary caregiver and/or caregiving team have access to these?

Interests & lifestyle

What are the patient’s hobbies? Does he or she belong to a church or other faith-based group? Does he or she get out of the house for social reasons? Get visitors at home? Do family members live close by? Is there someone from the patient’s faith community that can drive them to services?

What is substance abuse?

Substance abuse is the overuse of alcohol, illegal drugs, prescription drugs, or over-the-counter medications. The line between use and abuse is not always clear. A person has to decide where the line is for him or herself.

Substance abuse may feel like a loss of control, an inability to stop using a substance once you start, a dependence on the substance, and/or cravings for it. You may have a strong urge to which you cannot "Just say no." You may find you need more and more of the substance to getan affect. And, if you stop using it, you may experience nausea, sweating, shaking, vomiting, and anxiety.

Why is it important to pay attention to my eating now?

Eating right can be difficult when you’re caring for someone with cancer. Appointments may get in the way of meals. You might not like the food at the hospital or transfusion center. You may not have time or energy to cook. If your loved one is not eating on a regular schedule, you may be less motivated to prepare meals. But caregiving can stress your body and spirit. You're at greater risk of getting sick. So is the person with cancer. Eating well will help you both stay healthy. A healthy diet can help protect you from heart disease, bone loss, diabetes, high blood pressure, and other illnesses.

Why is it important to exercise now?

Exercise is important for good health. Just a few minutes of activity a day can improve your overall well-being. It can give you more energy, reduce stress, and lift your mood. It can also decrease your risk of heart disease, colon cancer, diabetes, osteoporosis, and high blood pressure. Caregivers that exercise regularly are less likely to be depressed, anxious, angry, or stressed.

How do I start exercising?

Talk your doctor before starting an exercise program. If he or she gives you the go-ahead, make a list of some activities you enjoy or have always wanted to try. Then look into exercise programs at nearby fitness centers, community colleges, local senior or community centers, etc. You can probably find classes for your age group and fitness level. For a personal fitness program, consider a personal trainer. Your doctor or the local health club can recommend one. If exercise has not been part of your daily routine, start slowly. Begin at a comfortable level, and add a little more activity each time you work out.

Try to get at least 2 hours and 30 minutes of moderate aerobic exercise per week or 1 hour and 15 minutes of vigorous aerobic exercise per week. Try starting with 10 minutes. Do strength-training at least 2 days a week. Try exercising each muscle group 8-12 times a session. Don’t worry if you can’t do that much. Anything is better than nothing!

Why do I need to think about my own health now?

Caregivers often brush aside their own needs. They tend not to go to the doctor as often as they should, and many do not get the preventative care that they need. But, caregiving can be physically and emotionally demanding. As a caregiver, you are at greater risk for colds, infections, and chronic diseases. Taking time to take care for yourself is important.

Men only: Prostate exams (for men age 40 or older or as directed by your doctor), and Prostate Specific Antigen (PSA) tests(as directed by your doctor).

Call your doctor to schedule your next appointment, or add a reminder on your calendar to do so later. If you don’t have a family doctor, eye doctor and/or dentist, ask a friend to recommend one. Also ask others to stay with the patient while you are at your appointments, and/or to remind you of your appointments and annual check-ups.

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This website was created to provide information, education, and support that will help cancer caregivers care for themselves and their family members. It is not meant as medical advice. Please check with your physician for any advice about your health.